Thursday, February 13, 2014

No rest for the weary

Reagan didn't sleep again last night! She was still very nauseous so I switched her over to pedialyte. Unfortunately, the chorea continued and she was unable to get much, if any, sleep! The chorea has been relentless today. She wasn't really nauseous at all during the day. She's been pretty serious most of the day, with the occasional frustration/fussing but I think she's just agitated with her body! We tried giving her clonidine to calm her down, but it didn't do a thing! This afternoon we had another care conference with Reagan's doctors...this one we were actually invited to! Unfortunately her neurologist didn't make it and her GI doc was very late, so it was really just us, palliative care, and the metabolic doc most of the time. He did go over the graphs that I had made (from Dec-now) and concluded that Reagan is on an 11day pattern. We also talked about getting her into endocrinology for a precocious puberty workup and labs. Once GI got there we came up with the plan for the month! (Neuro got last month, when we tried Lyrica, which we're currently weaning her off!) We're going to try to be proactive and when we see the bad days getting closer, we're going start her on round the clock Zofran and hydrocodone. Get the pain and the   nausea all at once. Hopefully it works...and if it doesn't, we'll try something new! Tonight Reagan is still having crazy chorea, the nausea has started back up again (but no throw ups), and shes had the crazy laughs! I dont see her settling down any time soon! Please pray that my girl can get some sleep tonight! She desperately needs some rest and relief from this nausea!


Anon said...

I am so incredibly humbled by you, I can tell you are beyond amazing and the love and patience you have is so inspiring. Reagan is a beautiful and lucky girl. Fingers crossed that she sleeps well tonight.

Reagan Leigh said...

Thank you so much for your sweet comment! I appreciate it more than words can say!